Advocating for my disabled brother, Robert, who has intractable epilepsy, unwavering faith and a delightful ability to declare everything excellent. Robert shows me everyday the power of the Magic of Excellent.

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Tuesday, June 19, 2012

Five Ways to be an Advocate When Caregiving

Caregiving. Family. Advocacy.

When I created “Robert’s Sister” I added these words to sum
up what I was all about.(Please
understand that for someone who tends to ramble, boiling down my purpose into
three words was quite an exceptional feat).

To me, advocacy goes hand in hand with caregiving (which is
just fine with this former Greenpeace rabble rouser).

When Robert was in the hospital with pneumonia and sepsis,
my advocacy tendencies were on high alert.It started with the 911 call and taking the
opportunity to ask the dispatcher to add a bit more information to the script she
read about seizures.

We are given plenty of opportunities to advocate when our
caree is in the hospital, visiting the doctor or even while living in a care
facility.For me, advocacy doesn’t mean being
a pain (or worse) but I will stand my ground if necessary.Since I’m not a huge fan of confrontation,
this can become a bit uncomfortable but it is definitely for the right cause –
my loved one’s health.

There are several ways to advocate for your caree but these
are my favorites:

1.Educate Yourself.Learn as much as possible about your caree’s
condition so you feel confident enough to educate others and you are able to
better advocate on your loved one’s behalf.I love learning as much as possible about epilepsy, research, treatments
and caregiving. There’s always something
to learn!

2.Educate Others.Robert has told me his purpose in life is to
educate others about epilepsy. He lights up when people ask him about his
seizures or epilepsy and will tell anyone who is interested, stories about his
brain surgeries or seizures when he was younger.When Robert meets a new doctor or nurse (and
he met several while in the hospital), I briefly explain what his seizures are
like because most people equate “seizure” with convulsions and I don’t want
them to miss a seizure if they are looking for the wrong characteristic.(Or miss an opportunity to catch him since he
gets very still then will fall down if he’s standing).It’s a great opportunity to let people know
there are several different kinds of seizures. Sometimes people ask follow up
questions which is a wonderful chance to educate about your cause, caree,
condition (or all of the above).

3.Take Notes (copious notes).The notes I took while in the hospital
actually prevented Robert from being discharged too early.On the second or third night, the nurse had
been inundated with patients and tasks and was unable to write her reports
until the end of her shift. Because she had been overwhelmed, she neglected to accurately
record Robert’s vitals.I had diligently
recorded his vitals each time they were taken and was able to show my notes to
the doctors when they excitedly walked in talking about how Robert didn’t have a
fever the previous night. They quickly stopped talking about discharge once
they saw my notes.

My husband takes this one step further.He helps his mom with her numerous medical appointments
and he has created a binder for her which includes all office visit summaries,
lists of medications, contact information – anything that might be needed at
the next visit or when seeing a different doctor. The binder has come in handy
on numerous occasions when a physician treating one condition needed to know
something about one of her other conditions.

4.Communicate.I made sure I was at the hospital for each
shift change so I could meet the nurse who would be on staff.After a few days, I finally figured out their
schedules (boy do they work hard!). I asked
the doctor for clarification if I didn’t understand something he said. I asked
what medication Robert was being given and went over Robert’s seizure medication
orders with each shift.They eventually
got used to me being there constantly and no one had a problem with me asking
questions. In fact, the staff told me on
more than one occasion they preferred more family involvement than less.The last person who is in a position to
communicate to the hospital staff is the patient who is sick, tired and
medicated.The patient needs an advocate
to keep information flowing to and from the staff.

5.Don’t be afraid to question.Doctors are very smart.They’ve been to a gazillion years of school
even if they do look like they’re 20 years old. They have knowledge I only wish
I had.What I have for them is knowledge
about my caree.I know Robert’s baseline
behavior – sleepy but not so sleepy he can’t keep his eyes open.I know Robert will tell the doctor he is “doing
excellent” when in fact he is running a fever.I know Robert will wake up with a wet brief and soaking wet sheets. I also
know the doctor is wrong when he tells me Robert has to go off all of his
seizure medications because his Valproic Acid levels (liver enzymes) are high. It’s situations like this when I can’t be
afraid to tell the doctor that he is incorrect and he needs to check with
Robert’s neurologist first (the neurologist is treating Robert for the high
Valproic Acid levels and, it turns out, the test was run too close to the time
he got his medications, falsely elevating the levels).

It can be difficult to tell a doctor “no”
but it is essential to caregiving.If
something doesn’t seem right, at least ask questions. Find out why the doctor
is making the decisions he or she is. Get a second opinion if necessary.

Just remember, no one knows your caree like
you do and no one can advocate on their behalf like you can.

These are just a few ways to advocate for
your caree.I’d love to hear ways you
have advocated for your caree.Please
share in the comment section and then get out there and advocate!

2 comments:

You're doing an amazing job and this post is testament to that. Your advice on questioning is so important. It can be intimidating to question a doctor but it has to be done when you know more about the person on care than even them. You're awesome.

Books for the Caregiver

365 Caregiving Tips: Practical Tips From Everyday Caregivers

Forever a Caregiver, by Trish Hughes Kreis

Tell Your Story

Do you want to tell your caregiving or epilepsy story? I would love to talk to you! Email me at robertssister@att.net and I will publish an interview with you. Telling our own story helps others while also helping ourselves. I look forward to hearing from you! Trish

About Me

Trish Hughes Kreis works as a full-time Legal Administrator and is a freelance writer, blogger and videographer who advocates on behalf of her disabled youngest brother, Robert. Robert lives with intractable epilepsy, has an unwavering faith and a delightful way of declaring everything excellent. Robert has lived with Trish and her husband, Richard, for four years and they do their best to keep him happy, healthy and, well, excellent.

Trish is an advocate for more research on the long-term effects of uncontrolled epilepsy as well as an advocate for expanding the definition of family to include sibling care under the California Family Rights Act and Family and Medical Leave Act.

Trish also does her best to navigate the maze of social services and government programs available to help Robert and keeps him entertained with an endless supply of word search puzzles and game shows.

Trish contributes articles and videos to the Assisted Living Directory and has written for Caring.com, The Intentional Caregiver, Today's Caregiver and the EmblemHealth “What Care Feels Like” microsite. Trish is a co-author and publisher of the "365 Caregiving Tips" book series written with four other experienced caregivers with the hope it helps other caregivers navigate the world of caregiving. Daily tips are posted on the 365CaregivingTips.com website.